The Psychosocial Effects of Solid Organ Transplantation on

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The Psychosocial Effects of Solid Organ Transplantation on Living The Psychosocial Effects of Solid Organ Transplantation on Living

Donors: A Literature Review Donors: A Literature Review

Christopher G. Evans University of Central Florida

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THE PSYCHOSOCIAL EFFECTS OF SOLID ORGAN TRANSPLANTATION

ON LIVING DONORS: A LITERATURE REVIEW

by

CHRISTOPHER G. EVANS

A thesis submitted in partial fulfillment of the requirements

for Honors in the Major Program in Nursing

in the College of Nursing

and in the Burnett Honors College

at the University of Central Florida

Orlando, FL

Spring Term 2019

Thesis Chair: Leslee D’Amato-Kubiet

ii

©2019 Christopher G. Evans

iii

Abstract

Historically the source for most organ donations were from the cadavers of deceased

donors. Over time living organ donation has become an important way to address the shortage of

organ availability. The purpose of this literature review is to explore the psychosocial effect the

organ donation process has on the living donor. The body’s physiological response to organ

donation had been well documented. However, the psychosocial effect of donation is now being

more appreciated and studies are being done to try to elucidate the factors that can influence the

living donor’s response to the transplant pro The ultimate goal of these queries is to provide

areas where clinicians can develop interventions that will enhance the post-donation experience

for the living donor. To conduct this literature review peer-reviewed, English language research

articles that were published between 2008 to the present were critiqued. In the end most living

donors had a positive experience and would not hesitate to donate their organ again; however,

there were a small minority of patients that did not fare well by psychosocial measures. These

patients many times were aware that the graft had failed in the recipient. This was the single

biggest factor in determining if the experience was positive or negative for the living donor.

Strategies, such as internet-based cognitive behavioral intervention, are being to be developed to

address the negative psychosocial outcomes that some living donors experience. Further studies

are necessary to determine additional factors that may alter the living donor’s experience and to

develop a tool-kit of interventions that can be applied as necessary to address the living donors

specific needs.

iv

Dedication

For my family whose support has enabled me to be successful throughout all my endeavors.

v

Acknowledgements

I would like to thank all those who have been involved and guided me through the process of

writing this literature review.

I would like to especially thank my thesis chair, Dr. Leslee D’Amato-Kubiet, for your guidance

and help in developing this review. It has been a truly rewarding experience working with you

through the process of writing this review.

I would also like to thank Dr. Sandra Galura, my committee member, for the guidance provided

in reviewing this paper. The incite regarding the topic and your suggestions were invaluable.

In addition, I would like to thank the College of Nursing and the faculty and staff that have

provided an exceptional educational experience. All the faculty have been so devoted to our

growth throughout the program.

Finally, I would like to thank Burnett Honors College for their guidance through the Honors in

the Major process.

vi

Table of Contents

Introduction……...………………………………………………………………………………...1

Problem….………………………………………………………………………………………...3

Purpose….…………………………………………………………………………………………4

Method….…………………………………………………………………………………………6

Background…….………………………………………………………………………………….7

Organ Failure………………………………………………………...………………………...7

Living Organ Donation…………………………………………...……………………………7

Medical Management………………………………………………...………………………...8

Psychosocial Effects in Transplantation……………………...…………...…………………...9

Education……………………………………………………………………...……………...13

Results…..………………………………………………………………………………………..14

Psychosocial Outcomes in Living Donors Post-Donation………………………...………….14

Psychosocial Outcomes in Living Kidney Donor……………………………….……….14

Psychosocial Outcomes in Living Liver Donor………………………………………….19

The Relationship Between Physiological and Psychosocial Outcomes in LKD...............23

Discussion…..……………………………………………………………………………………25

Psychosocial Outcomes Experienced by Living Donors…………………………………......25

Predictors of Psychosocial Responses Following Donation…………………………..……..26

Barriers to Care of Living Organ Donors………………………………………………….....26

Limitations……………………………………………………………………………………….28

Recommendations for Living Donor Psychosocial Health………………………………………30

vii

Future Investigations…………………………………………………………………...……..30

Interventions………………………………………………………………………...………..30

Nursing Practice…………………………………………………………………...………….31

Conclusions...………………………………………………………………………...……….32

Appendix A: Figure…….………………………………………………………………………..33

Appendix B: Table…….…………………………………………………………………………35

List of References………………………………………………………………………………..54

1

Introduction

In the United States (US), 34,770 solid organ transplants were performed in 2017 (U.S.

Department of Health and Human Services, 2018). The number of solid organ transplants

performed in the US increases each year causing an ever-growing number of people with end-

stage organ failure to be placed on waiting lists until a matched donor organ is available. As of

2018, there were 114,000 people awaiting a solid organ transplant (U.S. Department of Health

and Human Services, 2018). Renal transplants comprise approximately 56% of the solid organ

transplants performed in the US in 2017 while liver transplants account for approximately 23%

of the solid organ transplants during that year (U.S. Department of Health and Human Services,

2018). Regretfully, many individuals with end-stage organ failure placed on waiting lists for

solid organ transplant will not receive a transplant in time. As many as 20 people die each day in

the US waiting for a compatible organ for transplant (U.S. Department of Health and Human

Services, 2018). Unlike other solid organ transplants, organs for kidney and liver transplant can

come from healthy living donors as well as recently deceased donors. In the case of liver and

kidney transplantation, organs volunteered from living donors can greatly expand the availability

of viable organs for transplant. In some instances, complications and side effects related to organ

donation can arise that adversely affect the donor. In the proceeding fifty years much of the focus

has been placed on long-term complications the recipient of an organ endures. However, there is

a paucity of research that explores the long-term consequences of organ donation experienced by

the living transplant donor.

There are several unique burdens a person donating an organ can experience during the

years following surgical excision of a healthy organ. Organ donors may potentially have to take

leave from work due to unforeseen complications arising from donation, and the donor can then

2

have problems paying their monthly bills. In addition, donors may be denied health insurance

and life insurance following donation, which causes long-term financial difficulties. Besides the

financial burden that donors may incur due to time off work and future insurability issues, donors

may experience emotional, substance abuse, or other negative psychosocial burdens. While most

living organ donors do not experience any ill effects from donating their organs, up to 10% of

living kidney donors experience negative psychosocial outcomes (Jacobs, Gross, Messersmith,

Hong, Gillespie, Hill-Callahan, Taler, Jowsey, Beebe, Matas, Odim, & Ibrahim, 2015). Some

indicators such as underlying psychological distress and substance abuse problems are known

before undergoing donation and can increase the likelihood of the donor experiencing negative

psychosocial outcomes. On the other hand, lack of support and graft failure are important

indicators that can lead to negative psychosocial outcomes but are not apparent until after the

procedure. Jacobs and colleagues reported that up to 38% of kidney donors feel that they do not

receive support even from hospital staff following organ donation (Jacobs, et al., 2015).

However, graft failure was the greatest predictor of negative psychosocial outcome in post-

transplant donors (Jacobs, et al., 2015). Despite recognition that the negative psychosocial

outcomes can be problematic for a subset of organ donors, little has been proposed in the way of

interventions that may improve the donor’s long-term experience.

3

Problem

Living donor organ transplantation provides organs to individuals with organ failure that

would otherwise remain on waiting lists due to the lack of availability of solid organs suitable for

transplantation. However, since the inception of living organ donor transplantation, little

attention has been paid to the long-term consequences the organ donor has to endure following

the procedure. Evaluation of transplanted organs has mainly focused on the physiologic and

psychologic long-term outcomes in organ recipients, although more recently, problems

experienced by living organ donors is gaining attention.

The negative financial and psychosocial effects organ donation has on the living donor

has become more apparent. The single biggest predictor of the donor experiencing a negative

psychosocial outcome is related to whether the graft fails after being implanted into the recipient.

Identifying interventions aimed at alleviating the negative psychosocial effects of transplantation

for donors would be beneficial in improving outcomes. Given that donors whose recipients had a

graft failure are at the highest risk of developing negative psychosocial consequences,

identifying the subset of living organ donors with recipients that have grafts failure or rejection

might be an effective way of improving their transplant experience.

4

Purpose

The purpose of this literature review is to analyze the negative psychosocial effects that

organ donors experience after donation and to understand which donors are most at risk for

suffering negative experiences related to organ donation. It has been suggested that living kidney

donors experience mood disorders, fear of future organ failure, body image issues, and life

dissatisfaction more frequently than healthy controls (Rodrigue, Schold, Morrissey, Whiting,

Vella, Kayler, Katz, Jones, Kaplan, Fleishman, Pavlakis, & Mandelbrot, 2017). Exploring

effective interventions aimed at identifying possible complications of organ donation pre- and

post-transplant in the recipient and in the living donor could be useful in ensuring the best

possible psychologic and physiologic outcomes are experienced by the living donor.

The United Network for Organ Sharing (UNOS) has identified areas that can be assessed

as part of a psychosocial evaluation prior to donation. The areas identified by UNOS include

motivation to donate, social support, health behaviors, psychosocial history, psychiatric history,

donor knowledge and understanding of the risks, and family history as wells as financial history

and legal preparedness (Rudow, Swartz, Phillips, Hollenberger, Schmick, & Steel, 2015).

Another pre-donation screening tool developed is the Ethical, Legal, and Psychosocial Aspects

of Organ Transplantation (EPAT) (Massey, Timmerman, Ismail, Duerinckx, Lopes, Maple,

Mega, Papachristou, & Dobbels, 2017). Screening tools can assist the transplant team in the

identification of living donors at risk for poor psychosocial and physiologic outcomes after

donation and can raise awareness of the implications organ donation has on donor health status.

Understanding the effects of organ donation on the living donor will aid in caring for

donors post-transplant. Many individuals donating an organ will have positive experiences

before and after donation; however, organ donation has both physiologic and psychosocial

5

effects that can vary between individual experiences. Interventions can be developed to prevent

or lessen the impact of the physiologic and psychosocial effects on the donor. The information

synthesized from this literature review is expected to address physiologic and psychosocial

experiences of living organ donors and to explore interventions aimed at reducing the negative

aspects of organ donation pre- and post-donation.

6

Method

A review of the literature will be conducted to examine the physiologic and psychosocial

effects of organ transplantation on living donors from the following online databases:

Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature On-

Line (MEDLINE), Educational Resource Information Center (ERIC), and Psychological

Information database (PsycINFO) (Appendix A, Figure 1). Searches used a combination of the

following terms: ‘organ transplant*’, ‘living donor*’, ‘physiologic*’, and ‘psychosocial*’.

Articles included in the review will be published from 2008-2019, in the English language from

peer-reviewed journals. Articles will be reviewed to ensure relevance to the topic. Inclusion

criteria will consist of 1) focus on physiologic and psychosocial health status of living donor pre-

and post-donation, 2) experience of donation from the donor’s perspective, and 3) interventions

aimed at minimizing negative experiences from the donor’s point of view. Articles that focus on

the recipient experience in living donor organ transplantation will be excluded.

No relevant articles were identified when all four search terms were used. When,

physiologic* was excluded from the search, 258 articles were found (Appendix A, Figure 1). 57

articles were evaluated and individually critiqued. Only one article met the inclusion criteria by

specifically addressing both the psychosocial and physiological effects of organ donation.

Another 17 articles were identified that pertained to the psychosocial effects of organ donation

on the living donor. Three articles were identified that were outside the date range of the search

but were included to provide historical context for studies pertaining to living liver donation.

7

Background

Organ failure

Organ systems in the human body have specialized tasks to perform functions that

maintain homeostasis. In certain disease conditions, pathological changes can occur in the body’s

organs and impair their ability to properly function. Overtime pathological changes can cause the

organ to become permanently damaged, losing the ability to function and perform its

physiological role. When this happens, it is difficult for the body to compensate for the loss of

the organ due to tissue specialization innate to each organ and the biologic inability to regrow a

new organ. Ultimately the failure of an organ can lead to death. Solid organ transplantation is a

procedure that is performed when one or more organs have failed in attempt to restore organ

function. The procedure requires an intricate process that involves the screening patients and

donors, procurement of an organ, transporting the organ between institutions, and the

implantation into the patient with the failing organ. When the first kidney transplant was

performed in 1954 between two living identical twins, death would have been a common

sequelae from organ failure (Keller, 2015). Over the 6 decades since solid organ transplantation

has been performed great advances have been made in the types of organs that can be

transplanted and the survivability of the procedure. Kidney, liver, heart, and lung transplantation

are some of the most common solid organ transplants performed today (Keller, 2015).

Postsurgical management following transplantation has been an important advancement that has

enabled transplanted organs to function for extended periods of time. Early on survival rates

were low, but the introduction of immunosuppressant therapy opened the door to improved

treatment for organ transplant patients.

Living Organ Donation

8

Historically, transplanted organs were obtained from a deceased donor. Due to the nature

of procuring organs from deceased donors, the need for organs greatly outpaced the availability

of the organs. Most patients who received organ transplants obtained their organs from deceased

donors. Lack of donations and the fact that all organs from deceased donors are not useable in

transplantation greatly reduces the number of patients who can receive a new organ. While a

majority of the organs utilized in transplantation still come from deceased donors, approximately

4 out of 10 are obtained from live donors (U.S. Department of Health and Human Services,

2018). Being able to remove a whole or part of an organ from a living donor and then implanting

it into a recipient has greatly expanded the number of organs, such as the kidney or liver, that are

available for transplantation. However, the ability to remove an organ or a part of one from a

living donor and transfer the organ to a recipient presents a unique set of ethical and medical

issues for all involved.

Medical Management

Advancements in post-surgical management of transplant recipients has increased their

survival rate. Immunosuppressant therapy has assisted in reducing the incidence of organ

rejection in transplant recipients. Cyclosporine, which was first used in the early 1980’s, was a

mammoth advance that helps prevent the recipient from rejecting the donor organ (Keller, 2015).

Another important area in the management of individuals with transplanted organs has been in

preventing infections due to immunosuppression. However, much less research has been done to

characterize the long-term effects of organ transplantation on the living donor. While living

donors do not have to worry about rejecting their remaining organ or infections like recipients,

other complications often arise that can greatly affect the living donor’s quality of life. It is

possible for the donor’s remaining organ to fail, which would then necessitate them receiving an

9

organ transplant. Recognizing that organ donation is not a benign process and can have

ramifications on the living donor’s life is an important advance in the transplant process.

Psychosocial Effect in Transplantation

Historically much of the attention has focused on the effects that organ transplantation

has on the recipient. Besides having to consider organ rejection in recipients post-transplant,

recipients are also at risk for developing negative psychosocial outcomes following the

procedure. Depression, anxiety, aggression, and hopelessness are a few of the reported negative

psychosocial changes that have been reported in people with chronic illnesses (Schulz &

Kroencke, 2015). Addressing psychosocial issues has long-term implications for the health of the

transplant recipient. For example, depression in a transplant recipient can lead to lack of

compliance with their immunosuppressant regimen and a decrease in their quality of life

(Heinrich & Marcangelo, 2009). This is important because without adhering to the

immunosuppressant regimen, the recipient could possible suffer organ rejection. After

undergoing surgical implant of a donor organ, the potential for adverse psychosocial effects is

greatest the first year after transplant. There are also financial pressures on living organ donors,

just as there are for people with chronic illnesses, due to missing work following the procedure

and due to the recovery period. One psychosocial dimension that is different for living organ

donors pertains to whether the transplantation was successful or not. Graft success or failure is an

important predictor of psychosocial outcomes experienced by the living organ donor with graft

failure leading to potentially negative outcomes.

In the current body of literature, the effects of organ transplantation in living

organ donors is not as well delineated. In living tissue donation, kidneys are the most common

organ that is harvested and transplanted. The transplantation of livers from living donors is less

10

common but still represents a significant number of procedures. Recently, the risks posed by

donating organs has been a focus of concern. Beyond having a potential effect on the donor’s

health, other factors precipitated by organ donation can affect the donor’s quality of life. The

adverse effects that occur to organ donors can determine how they perceive the procedure. Most

donors donate their organs willingly to benefit those in need. This altruistic act normally has a

beneficial psychological effect on the donor. However, a minority of organ living organ donors

have a negative outcome from the donation process and this can greatly affect the donor’s

perception of the procedure. When the living donor experiences either a negative health or

psychosocial outcome, the living donor is more likely to regret the decision to donate their organ

in the first place. Understanding which living donors are at risk for developing adverse effects

from donating may allow health care providers to intervene, which will ultimately make for a

more positive experience for the living organ donor.

Organ donation can have multifactorial effects on the living donor’s health status, as well

as on the individual’s mental health well-being. In the case of kidney transplantation, the living

donor undergoes surgical resection and harvest of a healthy kidney to a recipient. The living

donor can successfully maintain physiologic homeostasis with one functional kidney, which is

why the procedure is feasible. To compensate the remaining kidney might hypertrophy. The

increase in size is indicative of the increased functional role even though the total capacity has

been reduced by removal of one of the organs. Once the living donor has donated their kidney,

the donor is at risk if their remaining kidney were to fail. The living donor in this situation would

require a kidney transplant. Even if the living donor’s remaining kidney does not completely fail,

it is possible that their kidney function may still decline. Meyer and colleagues reported that 26.7

percent of the living kidney donors had a low estimated glomerular filtration rate (eGFR)

11

(Meyer, Hartmann, Mjøen, & Andersen, 2017). A living donor was defined as having a low

eGFR if it was less than 60 mL/min/1.73 m2. In addition, Meyer and colleagues reported that

33.2 percent of the living donors in the cohort reported having hypertension following organ

donation (Meyer, et al., 2017). In the study hypertension was defined as having a blood pressure

greater than 140/90. One of the kidney’s functions is in regulating blood pressure. The alterations

caused by donating a kidney might explain why living donors experience an increase in blood

pressure.

The psychosocial effects of transplantation on the living donor are less understood. Since

only a minority of living donors experience a negative psychosocial outcome, it is imperative to

understand which donors are more likely to experience the complications. Factors such as age,

relationship status, social support, financial status, and coping style have been looked at in

relation to the development of negative psychosocial outcomes in living donors. Age has been

identified as a predictor of negative psychosocial wellbeing after organ donation in living donors.

Younger kidney donors who were not married are more likely to exhibit negative psychosocial

effects post-donation. The same trend has been observed in living liver donors. Being 40 to 50

years old was associated with a more positive effect on the donation experience (Dew,

DiMartini, Ladner, Simpson, Pomfret, Gillespie, Merion, Zee, Smith, Holtzman, Sherker,

Weinrieb, Fisher, Emond, Friese, Burton, & Butt, 2016). Also, the financial burden resulting

from organ donation can be substantial. The living donor may miss work, which can lead to a

decrease in wages. In addition, the recovery period can sometimes be longer than expected. The

longer it takes to recover can strain finances. Another financial hardship can be placed on the

donor due to the inability to get health and life insurance years after the donation. Financial and

12

social support can affect the level of stress the living organ donor experiences. The living

donor’s ability to cope with these stresses will affect their perception of the donation process.

Further, living organ donors have many of the same psychosocial changes experienced in

the organ donor recipients. Living organ donors can have depression and anxiety due to changes

in their health status and fear regarding what happens if their remaining organ fails. Living organ

donor may be frustrated due to the perception that once they have donated their organ they are an

afterthought and do not receive as much follow-up by the healthcare team following the

procedure. There are also financial pressures on living organ donors, just as there are for people

with chronic illnesses, due to missing work following the procedure and due to the recovery

period. One psychosocial dimension that is different for living organ donors pertains to whether

the transplantation was successful or not. Graft success or failure is an important predictor of

psychosocial outcomes experienced by the living organ donor with graft failure leading to

potentially negative outcomes.

Graft failure in organ transplantation has serious implications for the recipient’s ability to

survive short of receiving another organ donation. While this is imminently more stressful for the

organ recipient due to the life and death issues presented by the situation, it is also

understandable that the person who just donated an organ could also be affected by this adverse

outcome. Graft failure has been shown to be one of the few causes for living donors to have

regrets in undergoing the organ transplantation process (Meyer, Wahl, BjØrk, WislØff, Harmann,

& Andersen, 2016). There are many reasons why graft rejection could lead to regrets the donor

experiences. The donor could resent the time and financial burden that they went through if the

graft rejects. Graft failure could be particularly difficult for the living donor if the recipient was a

close relative. The donor could experience a feeling of guilt due to the fact that the recipient did

13

not survive. Understanding the guilt that living organ donors experience and developing nursing

interventions to alleviate this negative psychosocial effect will be invaluable for improving the

donor’s experience following the transplantation procedure.

Education

Interventions used to lessen the impact of transplant complications affecting the living

donor would be useful to alleviate negative psychosocial effects of the transplant process on the

living donor. Psychosocial causes of distress that effect the living donor can be difficult to target.

Some examples have been suggested in the literature for interventions to prevent poor

psychosocial outcomes. One example is of an internet-based cognitive-behavioral intervention

(ICBT). In this pilot study the health-related quality of life, anxiety, and depression were

observed before and after the intervention to see if the ICBT was effective at alleviating

problems associated with organ donation (Wirken, van Middendorp, Hooghof, Bremer, Hopman,

van der Pant, Hoitsma, Hillbrands, & Evers, 2018). The ICBT had extensive donation-related

treatment modules, assignments, and psychoeducation. In the pilot study, most participants

reported benefits on health and psychological health-related quality of life measures, depression

measures, and in reports of fatigue. Further studies are warranted because the scores are based

off the responses of eight living donors. This provides a starting point to develop this and other

methods to prevent living donors from developing negative psychosocial outcomes that

negatively affect their transplant experience.

14

Results

Twenty-one studies were identified related to the psychosocial effect organ donation has

on the living organ donor. The studies were included in the literature review. Included in the

articles were two sentinel studies, one of which was a pilot study in the discipline, from 2001 and

2002. Twenty studies had been published since 2008. All the studies were cohort studies. All the

studies used various questionnaires to measure the living donors’ quality of life. Five of the

studies involved qualitative interviews of the living donors following the transplant procedure.

Psychosocial Outcomes in Living Donors Post-Donation

The literature review identified two major groups of living organ donors. The majority of

living organ donation involves transplantation of the kidney; however, there are a significant

number of liver transplants involving living organ donors. The studies synthesized in the

literature search identified certain factors that can negatively affect the psychosocial outcomes

kidney and liver donors experience.

Psychosocial Outcomes in Living Kidney Donors

Ten studies were identified that explored the psychosocial effect of organ donation in

living kidney donors.

The health-related quality of life (HRQoL) questionnaire was examined in living kidney

donors (LKD) for a small cohort study, which involved the donors responding to the Short Form-

36 (SF-36), Giessen Subjective Complaint List (GBB-24), and the Zerssen’s Mood Scale (Bf-S)

questionnaires (Maglakelidze, Pantsulaia, Managadze, & Chkhotua, 2011). In the eight domains

of the SF-36, social function (p=0.0001), bodily pain (p=0.0357), and vitality (p=0.0478) were

domains the living kidney donors scored higher and more positive ratings than the control

patients or renal tumor patients who had undergone nephrectomies (Maglakelidze et al., 2011).

15

In addition, the living kidney donors (LKD) scored higher in the GBB-24, and the only domain

in which the difference in scores was statistically significant was in the gastric complaints

domain (p=0.008) (Maglakelidze et al., 2011). In the Bf-S questionnaire, the living donors scored

higher than both the control and renal tumor patients (p=0.0007 versus controls and p < 0.0001

versus patients) (Maglakelidze et al., 2011). This study indicated that LKDs fared well following

organ donation by the measures of HRQoL included in the study.

Another study explored the effect organ donation had on psychosocial outcomes in

LKDs. In the study, various questionnaires were employed to measure the effect organ donation

had on the LKDs psychosocial outcomes (Maple, Chilcot, Weinman, & Mamode, 2017). The

Short Form-12 (SF-12) was utilized to measure the LKDs physical HRQoL (Maple et al., 2017).

The LKDs were found to have a significantly lower SF-12 score 3 months following donation (p

< 0.05); however, the SF-12 score at 12 months following donation was lower than the pre-

donation score but not significantly lower (Maple et al., 2017). This study also found that by all

measures LKDs had very little change in their HRQoL by 12 months after kidney donation.

In another cohort study, the investigators were interested in determining the long-term

effects on mood in organ donors following kidney donation. The investigators utilized the Patient

Health Questionnaire (PHQ-9) depression screening instrument, the Life Orientation Test-

Revised, and the 36-Item Short Form Health Survey to screen LKDs following donation

(Jowsey, Jacobs, Gross, Hong, Messersmith, Gillespie, Beebe, Kew, Matas, Yusen, Hill-

Callahan, Odim, Taler, & the RELIVE Study Group, 2014). The study found the biggest

predictors of the living organ donor suffering from symptoms of depression following kidney

donation consisted of being a race other than white (p=0.020), being younger when they donated

their kidney (p=0.002), having a longer recovery time following donation (p=0.0009), having a

16

large financial burden (p=0.013), and feeling obligated to donate the kidney (p=0.003) (Jowsey

et al., 2014). The study identified factors that could indicate the living donor was more likely to

develop depression following organ donation even though the overall prevalence of depression

was similar between LKD and the controls.

Other psychosocial outcomes evaluated following organ donation included mood, body

image, fear of kidney failure, and decisional stability. One study used the Profile of Mood States

(POMS) to assess anxiety, depression, and mood, the 5-Item Fear of Kidney Failure

questionnaire, 10-Item Body Image Scale (BIS), and 5-Item Satisfaction with Life Scale (SWLS)

to measure the psychosocial outcomes in LKDs (Rodrigue et al., 2017). The outcomes measured

in this study yielded similar results for LKDs and healthy controls (HC). When looking for

predictors of psychosocial outcomes following donation, older age was associated with less

chance of developing a mood disorder post-donation (p=0.001) and having a mood disorder pre-

donation was more likely to be associated with a mood disorder following donation (p=0.01)

(Rodrigue et al., 2017). The predictors of fear of kidney failure were marital status with being

married associated with less change of developing the fear (p=0.004) and pre-donation fear of

kidney failure increasing the chances of developing the fear post-donation (p < 0.001) (Rodrigue

et al., 2017). Pre-donation body image issues and feeling pressured to donate were predictors of

having body image issues following donation (p=0.002 and p=0.02, respectively) (Rodrigue et

al., 2017). Being white was associated with a decreased chance of developing life dissatisfaction

while pre-donation life dissatisfaction was associated with an increased chance of developing life

dissatisfaction following donation (p=0.003 and p <0.001, respectively) (Rodrigue et al., 2017).

While the LKDs and HCs had comparable psychosocial outcomes, several predictors of negative

outcomes for LKDs were identified in this study.

17

The factors that have negative and positive effects on LKDs along with the HRQoL were

explored in a randomized, cohort study (Hsieh, Chien, Liu, Wang, Lin, & Chiang, 2017)

following organ donation. In this study women demonstrated a higher positive psychosocial

effect than men (p < 0.05) (Hsieh et al., 2017) following the donation and transplant experience.

Also, lack of having a chronic disease was associated with having a positive effect on

psychosocial perceptions of the donation experience (Hsieh et al., 2017). The psychosocial

ratings were more favorable following organ donation if the person perceived themselves as

having greater physical health prior to the organ donation (p < 0.01) (Hsieh et al., 2017). When

the psychosocial effects of organ donation were rated as higher by the donor, the LKDs generally

had higher HRQoL scores (p < 0.05) (Hsieh et al., 2017). This study indicated that LKDs rating

their donation experience as positive with fewer negative effects had higher HRQoL scores.

To predict mental health following donation in LKDs, several psychological factors were

explored to determine their effect on mental health. In one prospective cohort study

(Timmerman, Timman, Laging, Zuidema, Beck, Ijzermans, Busschbach, Weimar, & Massey,

2016), the authors reported that being young (p=0.002) and having a deficiency in social support

indicated and increased risk for negative psychological symptoms (Timmerman et al., 2016).

Also, increased amounts of stress led to a decrease in overall well-being (p < 0.001)

(Timmerman et al., 2016). Providers that recognize potential predictors of negative psychosocial

outcomes in LKD can improve the organ donation experience by optimizing interventions aimed

at decreasing stress in the donor and by surrounding the donor with supportive individuals.

Previously, Timmerman, Laging, Westerhof, Timman, Zuidema, Beck, Ijzermans, Betjes,

Busschbach, Weimar, & Massey (2015) suggested there was no difference between the mental

health outcomes for LKDs and HCs. The authors reported no change in psychological complaints

18

(p=0.20) or in well-being (p=0.10) for LKDs following organ donation (Timmerman et al.,

2015). There was also no difference detected between the LKDs and HCs in regards to changes

in psychological complaints and in well-being (p= 0.48 and p=0.85, respectively) (Timmerman

et al., 2015). Ultimately this study suggests there are no discernible differences between LKDs

and HCs in mental health outcomes.

Another group looked at the prevalence of anxiety, depression, and regret of donation in

LKDs following donation. In this cohort study, the rates of anxiety, depression, and regret of

donation in LKDs was 5.5%, 4.2%, and 2.1%, respectively (Holscher, Leanza, Thomas,

Waldram, Haugen, Jackson, Bae, Massie, & Segev, 2018). The chances of a positive screening

for depression were higher if the LKD screened positive for anxiety (p < 0.001) (Holscher et al.,

2018). There was also an increased chance of having a positive depression screen if the recipient

of the kidney lost the graft (p < 0.001) (Holscher et al., 2018). The LKD was more likely to

regret the decision to donate the kidney if the LKD had a positive anxiety screen (p < 0.0001)

(Holscher et al., 2018). These factors were the only ones that were found in this study to be

predictors associated with anxiety, depression, or regret of donation.

Meyer, Wahl, Bjørk, Wisløff, Hartmann, & Andersen (2016) reported on quality of life

(QoL) measures eight to twelve years following the living donor’s kidney donation. Most of the

donors had high QoL scores. The only significant findings were that women had higher fatigue

score than men (Meyer et al., 2016). Women scored significantly higher than men in general

fatigue (p=0.01), physical fatigue (p=0.01), reduced motivation (p=0.04), and mental fatigue

(p=0.03) (Meyer et al., 2016). Gender may be a factor that clinicians may look at in LKDs to

ensure that female donors are not adversely affected by fatigue following donation.

19

Like other studies, graft failure was identified as a factor in poor psychological outcomes

of LKDs (Jacobs, Gross, Messersmith, Hong, Gillespie, Hill-Callahan, Taler, Jowsey, Beebe,

Matas, Odim, Ibrahim, & the RELIVE Study Group, 2015). The study suggested one in ten

LKDs experienced a negative psychosocial or financial consequence following donation (Jacobs

et al., 2015). The only predictor of a negative psychosocial outcome statistically significant was

if the recipient’s kidney was no longer functioning (p < 0.001) (Jacobs et al., 2015). This is

consistent with the findings of similar cohorts of living organ donors. Graft failure has been

reported to have negative consequences on the LKDs psychosocial outcomes (Holscher et al.,

2018).

Psychosocial Outcomes in Living Liver Donors

Ten studies were identified that addressed the psychosocial outcomes in living liver

donors (LLD). Three of the cohort studies did not meet the inclusion criteria because they were

published before 2008, when there was a sharp increase and better outcomes in living organ

donation due to advanced drug therapies and surgical techniques but were included to give

context to the topic.

Walter, Bronner, Pascher, Steinmüller, Neuhaus, Klapp, & Danzer (2002) looked at the

psychosocial outcomes of LLDs at six months following the transplant procedure. Overall the

participants in the study had a higher global quality of life 6 months after the procedure

(p=0.044) (Walter et al., 2002). However, 26% of the LLDs also had high values for tiredness (p

< 0.0012) and fatigue (p < 0.0012). Ultimately most of the LLDs in the study had a good QoL

following donation, and the procedure could be done without the ethical dilemma of doing harm

to the donor.

20

Another early article described the QoL of LLD before and after liver donation. The

LLDs were assessed using the WHOQoL questionnaire (Walter, Dammann, Papachristou,

Neuhaus, Danzer, & Klapp, 2003). Before donating the LLDs scored higher on the WHOQoL

questionnaire than the general population (p < 0.05) (Walter eta l., 2003). At six months, the

LLDs were re-assessed with the WHOQoL and the LLDs score significantly lower on physical

health (p < 0.05) and living conditions (p < 0.05) than before they donated their livers (Walter et

al., 2003). This study suggested the LLD’s, had a positive psychosocial outcome after partial

organ donation following transplantation to the recipient.

In the final early cohort study, the authors looked at the QoL that LLDs experienced

following transplant. The LLDs scored similar to HCs on the SF-36, which has been a validated

questionnaire to assess QoL. The only domains that the LLDs differed from the HCs were

physical function, social function, and mental health (p < 0.05) (Trotter, Talamantes, McClure,

Wachs, Bak, Trouillot, Kugelmas, Everson, & Kam, 2001). Ultimately, the some LLDs reported

body image issues, mild ongoing symptoms such as abdominal discomfort, significant out of

pocket expenses; however, all the LLDs stated that they would donate a portion of their livers

again if given the chance (Trotter et al., 2001). This was an early study that demonstrated the

lack of harmful effect for people donating a section of their liver to another.

DuBay, Holtzman, Adcock, Abbey, Greenwood, Macleod, Kashfi, Jacob, Renner, Grant,

Levy, & Therapondos (2009) looked at the QoL living donors experienced and looked at

predictors to those outcomes. The physical composite score as measured by the responses of

LLDs on the SF-36 demonstrated a higher physical composite score (p < 0.001) (DuBay et al.,

2009). Physical functioning (p < 0.001), role interference (p < 0.05), bodily pain (p < 0.001),

general health (p < 0.001), and vitality (p < 0.05) were all domains that the LLDs scored better

21

than the average Canadian on (DuBay et al., 2009). While LLDs reported mental health scores

on the SF-36 similar to the average Canadian, there were several predictors , such as age

(p=0.023), presence of a psychiatric diagnosis (p=0.007), degree attained (p=0.001), and pre-

donation concerns about donation all (p=0.029) that were all predictors of mental health changes

seen following liver donation (DuBay et al., 2009). This study identified some predictors that

could cause changes in a LLDs mental health outcomes following organ donation.

In a multicenter cohort study, the authors identified several factors that affect the

psychological outcomes in LLDs. Butt, Dew, Liu, Simpson, Smith, Zee, Gillespie, Abbey,

Ladner, Weinrieb, Fisher, Hafliger, Terrault, Burton, Sherker, & DiMartini (2017) identified

factors that affect the Simmons better person score were time since donation (p < 0.001), being a

first degree relative versus unrelated (p=0.012), female gender (p=0.008), recipient death (p <

0.001), ambivalence (p=0.005), and motivation to donate (p < 0.001) (Butt et al., 2017). The

predictor that was more likely to be associated with a negative donation experience was the death

of the recipient. Up to 22% of the LLDs felt responsible when the recipient died following the

transplant (Butt et al., 2017). This study reiterated the fact that the recipient’s outcome can have

a great effect on the donor’s experience.

A cohort study conducted in Japan, compared the psychological outcomes of recipient

and donors three to five years following living donor liver transplants. In this study, the social

QoL (p= 0.026) and total QoL (p=0.005) were lower after the donation procedure (Noma,

Hayashi, Uehara, Uemoto, & Murai, 2011). LLDs also reported fewer anxiety symptoms

following transplantation (Noma, et al., 2011). The study identified social support as a predictor

of QoL following donation. Those living donors with less familial support had a greater chance

of worse psychosocial outcome following organ donation. Knowing predictors of these outcomes

22

could allowed clinicians to target this patient population to prevent a negative experience

following donation.

In a long-term study, Ladner, Dew, Forney, Gillespie, Brown, Merion, Freise, Hayashi,

Hong, Ashworth, Berg, Burton, Shaked, & Butt (2015) followed LLDs for up to 11 years

following transplant. The best predictor of a negative score on the SF-36 was if the recipient had

died within 2 years of receiving the kidney transplant (Ladner et al., 2015). One factor that was

identified as a protective factor was education. LLDs that had a bachelor’s degree generally

reported a higher PCS score on the SF-36 (Ladner et al., 2015). Even though most LLDs have a

positive experience following organ donation, and higher education was identified as a

significant to improved quality of life following organ donation. This can assist clinicians with

determining which LLDs need further education and reinforcement of the psychosocial

expectations following donation to lessen the chance of adversely affecting the LLD’s HRQoL.

A long-term cohort study was conducted to evaluate the prevalence of adverse

psychosocial outcomes in LLDs (Dew, Butt, Liu, Simpson, Zee, Ladner, Holtzman, Smith,

Pomfret, Merion, Gillespie, Sherker, Fisher, Olthoff, Burton, Terrault, Fox, & DiMartini, 2018).

The authors in this study found that LLDs were more likely to have anxiety and alcohol abuse

disorder (Dew et al., 2018). Other factors, such as length of hospital stay, female gender, higher

body mass index (BMI), fear of health related effects, and out-of-pocket expenses were

associated with a worse QoL (Dew et al., 2018). Anxiety and substance abuse disorders can have

a negative impact on the QoL that a LLD has. Screening prior to organ donation for individuals

at risk of developing substance abuse problems in a LLD population would be beneficial.

Previously, Dew, DiMartini, Ladner, Simpson, Pomfret, Gillespie, Merion, Zee, Smith,

Holtzman, Sherker, Weinrieb, Fisher, Emond, Freise, Burton, and Butt (2016) found several

23

factors that led to lower HRQoL. These factors included male gender (p<0.001) and being non-

Hispanic white (p<0.001) (Dew et al., 2016). The authors also identified a factor that had a

positive effect on HRQoL, which was being between 40 to 50 years old (p=0.008) (Dew et al.,

2016). Additionally, the MCS scores were poorer in those donors that had extended

hospitalizations following donation (p=0.009) indicating a decrease in the HRQoL (Dew et al.,

2016). While age can be a protective factor, other predictive factors such as financial costs,

extended hospitalization, race, and gender might be used to identify donors that require follow-

up care and long-term surveillance.

Kimura, Onishi, Sunada, Kishi, Suzuki, Tsuboi, Yamaguchi, Imai, Kamei, Fujisiro,

Okada, Ishigami, Kiuchi, & Ozaki (2015) evaluated the impact psychiatric conditions had on

LLDs. The authors identified 6 individuals who had not had a psychiatric issue before donation

and subsequently developed a psychiatric disorder following organ donation. The 6 individuals

represent 4.2% of the total number of LLDs (n=142) screened for participation in the study

(Kimura et al., 2015). The LLDs with a mental health disorder and were treated for the disorders,

were evaluated before and after the organ donation process. Half of the LLDs were able to stop

drug therapy during the donation process while the other half required therapy over an extended

time frame (Kimura et al., 2015). The low prevalence of mental health disorders in individuals

that donate organs can make it difficult to draw conclusions from a small cohort of living organ

donors.

The Relationship Between Physiological and Psychosocial Outcomes in LKD

There was one study that met the inclusion criteria and addressed both the physiological

functioning of the kidney following donation and the psychosocial impact of donation.

24

The long-term effects of kidney donation on the living donor are not well elucidated

particularly when trying to determine whether physiological functions affect psychosocial

outcomes. Meyer, Hartmann, Mjøen, & Andersen (2017) attempted to correlate physiologic

functioning with QoL in LKDs. There were no significant associations that could be drawn

between clinical variables, such as blood pressure (BP), creatinine, estimated glomerular

filtration rate (eGFR), hemoglobin, or cholesterol panels, and QoL scores on the SF-36 (Meyer et

al., 2017). The only correlations that could be discerned were between gender and general

fatigue (p < 0.05) and between BMI and physical fatigue (p < 0.01) (Meyer et al., 2107). This

small-scale study failed to really find a correlation between physiological function 10 years

following kidney donation and the LKDs QoL.

25

Discussion

The studies included in this literature review can provide insight into the psychosocial

effects that organ donation has on the living donor; however, other factors concerning the

donation process and outcomes in the transplant recipient that may be important in the living

donor’s experience following donation have yet to be identified. The main factor identified in

several of the studies was that graft failure and the resultant death of the recipient led to feelings

of guilt and negatively affected the psychosocial outcomes experienced by the living donors.

Various studies also identified predictors that indicated whether the living donors experienced

psychosocial sequelae from donating their organs.

Psychosocial Outcomes Experienced by Living Donors

Most LKDs and LLDs experienced no adverse effects from donating their organs to

another person. Some living donors even demonstrated higher measures of psychosocial

functioning after they had donated their organ. There were a number of LKDs that experienced

mood disturbances following donation of their kidney. Up to 16% of LKDs were found to have

new-onset mood disturbances following kidney donation (Rodrigue et al., 2017). The studies by

in large used questionnaire to measure the living donors’ QoL. Several of the studies also

employed interviews to ascertain the donors’ feelings about the transplant experience.

Most of the studies found that living donors had no negative consequences following the

transplant procedure (Ladner et al., 2015; Maglakelidze et al., 2011; Maple et al., 2017; Meyer et

al., 2017; Timmermann et al., 2015). There were several groups of people who seemed to have

more negative psychosocial outcomes in the studies. The first group that had negative

psychosocial effects form the donation experience had knowledge that the graft they had donated

was no longer functioning in the recipient (Butt et al., 2017; Meyer et al., 2016). The other group

26

that tended to have a more negative QoL following donation were those that had pre-existing

deficits in psychosocial functioning (Hsieh et al., 2017; Rodrigue et al., 2017; Timmerman et al.,

2016). Several studies tried to identify predictors to determine which living donors were most at

risk of having negative psychosocial outcomes.

Predictors of Psychosocial Responses Following Donation

The psychosocial factors identified in the studies synthesized for this literature review

were associated with either positive or negative effects on the organ donation outcomes

experienced by the living donor. There were no uniform predictors of psychosocial response to

organ donation that could be identified. In several studies gender was predictive of QoL

measures of psychosocial outcome, such as fatigue (Dew et al., 2016; Hsieh et al., 2017; Meyer

et al., 2016; Meyer et al., 2017). Another predictor that was identified in some studies was age.

Being older at the time of organ donation was considered protective and older individuals

responded more favorable on QoL measures of psychosocial outcomes (Jowsey et al., 2014;

Rodrigue et al, 2017). The existence of pre-existing mood or mental disorder was found to be a

negative indicator of psychosocial outcome in living donors (Holscher et al., 2018; Rodrigue et

al., 2017). The death of the recipient was also a negative indicator to the living donors transplant

experience (Butt et al., 2017; Jacobs et al., 2015; Rodrigue et al., 2017).

Barriers to Care of Living Organ Donors

Most of the studies suggested living donors should be monitored to ensure the donors did

not experience any negative psychosocial effects from the transplantation process. One barrier to

this involved the way the clinician would measure any changes. While the SF-36 was used in

many of the studies, there were a variety of questionnaires employed in the studies included in

this review. Without uniformity in the process of data collection, it is difficult to draw over-

27

arching conclusions and assumptions to identify psychosocial complications experienced by

living organ donors and those in need of interventions following donation of an organ.

One other variable to address is when the evaluations for psychosocial complications

should take place following organ donation. There were a wide variety of time points that were

used to evaluate the psychosocial well-being of the living donors. Some studies looked at long-

term effects of living organ donation by looking at living donor responses to questionnaires a

decade or more from the time the procedure occurred (Jacobs et al., 2015; Ladner et al., 2015;

Meyer et al., 2016; Noma et al., 2011). Other studies followed living donors for a much shorter

time following the transplantation procedure. These studies might have followed the living

donors for two or less years (Butt et al., 2017; Dew et al., 2018). Given that a living donor’s

experiences are not likely to be the same at different time periods following the transplantation

procedure, it is hard to compare studies that encompass such disparate time frames and apply the

authors’ findings to the living donor population in general.

Financial barriers can also present a problem for living donors. There can be large sums

of out-of-pocket expenses. Living donors can also experience problems obtaining health

insurance and life insurance following the procedure. Without gaining an understanding of the

financial implications of living organ donation, it will be impossible to develop ways to contain

the cost and prevent undue financial harm to the living donor.

28

Limitations

The studies included in this literature review had several limitations. Using general

keyword searches, such as organ transplant, living donor, psychosocial, and physiologic,

provided numerous articles. When filtering for publication dates and language, the number of

articles germane to the topic greatly diminished. Only one article was identified that completely

met the inclusion criteria while looking at physiological data and QoL measures. The search was

expanded by varying the keywords and expanding the search terms to include different

permutations of the keywords like organ transplant*. The articles included in this review were

analyzed after appearing in the keyword search to determine whether they met the inclusion

criteria. This process is subjective, so some articles may have been overlooked while some may

have been erroneously included.

One of the limitations that became apparent from the studies included in this literature

review was the sample sizes of the studies. Several of the studies had sample sizes smaller than

50 individuals (Hsieh et al., 2017; Noma et al., 2011; Trotter et al., 2001; Walter et al., 2003;

Walter et al., 2002). The sample sizes of these studies make it unlikely that the living donor

population is diverse enough to apply the findings on the population at large. The largest studies

were multicenter studies that had 2,455 participants (Jacobs et al., 2015; Jowsey, 2014). Not all

the studies were made up of diverse populations. Several were conducted at single centers in

Asian or European countries (Hsieh et al., 2017; Kimura et al., 2015; Maglakelidze et al., 2011;

Meyer et al., 2017; Meyer et al. 2016; Noma et al., 2011; Walter et al., 2003; Walter et al.,

2002). All the studies were a cohort design but given the nature of the question being researched

that would be expected.

29

Retention and attrition rates in longitudinal, cohort studies can influence causal

correlations that occur in a population. Large attrition rates or low retention rates can skew the

results obtained. Even in the larger trials the response rate is important to note. Only 2,455 living

donors participated in the study out of 6,909 who had been contacted after they were found to be

eligible (a 36% response rate) (Jowsey et al., 2014). The people who ended up participating may

not be representative of the general population. Rodrigue et al. (2017) reported an 84% response

rate. The longer the study is designed to continue collecting data, the more likely the attrition rate

will grow. Rodrigue et al. (2017) lost one living donor to follow-up because the donor died.

30

Recommendations for Living Donor Psychosocial Health

Future Investigations

There was one article identified that discusses an ongoing cohort study that seeks to also

answer whether the physical function of the LKD’s body is correlated to any psychosocial

outcomes. The study aims to see if kidney function is associated with changes in QoL

(Suwelack, Wörmann, Berger, Gerß, Wolters, Vitinius, Burgmer, & the German SoLKiD

consortium, 2018). The primary outcome will be the association of the eGFR with the QoL

obtained through the SF-36 in LKDs (Suwelack et al., 2018). The results from this study will add

to the body of literature that meets the inclusion criteria that was set out for this literature review.

Further studies using the similar time frames and similar questionnaires are necessary to

determine whether the psychosocial alteration observed post-donation are applicable across the

living donor population. It is hard to compare a study carried out 10 years post-donation to one

that looks at the living donor’s psychosocial outcome one year following donation. Several of the

studies used several different questionnaires (Holscher et al., 2018; Maglakelidze et al., 2011;

Maple et al., 2017). While one questionnaire might not be able to measure every aspect of the

domains of the psychosocial outcomes, it can be hard to directly compare the data obtained from

two different questionnaires.

Interventions

The predictors identified from studies are an important step in being able to identify

where interventions can be strategically employed to improve the living donor’s experience

following organ donation. These predictors allow the clinician to target those more likely to need

the intervention. Given the multifaceted dimensions related to psychosocial health, it is likely

that a variety of interventions will have to be developed.

31

Since there are not many examples of interventions to address psychosocial functioning

in living donors, ideas can be generated from other conditions. Dew, Zuckoff, DiMartini, Dabbs,

McMulty, Fox, Switzer, Humar, & Tan (2012) published a report were they had developed an

intervention and did some feasibility testing to try to prevent negative psychosocial outcomes in

living donors. The framework the authors used was based upon interventions for motivational

interviews (MI’s). The goal was to motivate the living donor to change behavior thus improving

their psychosocial outcome (Dew et al., 2012). While there was no data obtained that directly

indicated the intervention improved psychosocial outcomes, the authors found that the living

donors liked being able to talk and have their comments listened to so that any concerns could be

addressed (Dew et al., 2012). Interventions based upon those used in other conditions might be a

place to begin since there are a dearth of validated examples.

Another intervention, internet-based cognitive-behavioral therapy (ICBT), was proposed

and tested for its feasibility (Wirken, van Middendorp, Hooghof, Bremer, Hopman, van der Pant,

Hoitsma, Hillbrands, & Eveers, 2018). The authors developed an ICBT intervention for LKDs

and donor candidates (Wirken et al., 2018). Anxiety and depression were assessed before and

after the intervention. Wirken et al. (2018) suggested that the intervention improved measures

such as depression in the eight living and candidate donors in the pilot study. The study was not

designed to assess effectiveness so whether the intervention works in practice remains to be seen.

Nursing Practice

The findings synthesized in this review can have various implications to the practice of

nursing. Nurses need to stay abreast of the research to practice effectively. This review

condenses what is known about the psychosocial effects of donation on living organ donors. To

be able to make sound clinical judgements, nurses need to know where holes in the current body

32

of knowledge are so that decisions can be based on the evidence. Nurses are also an advocate for

their patients. Ultimately, nurses want to prevent harm to their patient by advocating on their

behalf.

Psychosocial domains are multifaceted so will require a team approach to identify and

address. Nurses are at the best position to help coordinate care to maximize the person’s

psychosocial outcome. Nurses are frequently the first to see that there is a problem due to the

amount of time that they spend with their patients. Nurses may be involved in the

implementation of interventions to resolve any psychosocial problems that living donors have.

Conclusions

While most living organ donors have no problems following donation and report no

negative psychosocial outcomes, there is a subset of living donors that do not have a pleasant

experience following donation. The nurse may be involved in identifying living donors at most

risk of having negative psychosocial outcomes through screeners or participating in a team to

implement interventions to address any problems. The literature indicates that one of the leading

factors associated with an adverse psychosocial outcome is related to the death of the recipient

(Butt et al., 2017; Jacobs et al., 2015; Rodrigue et al., 2017). When the recipient dies following

graft failure, this should be an indicator to follow the living donor more closely and implement

any necessary interventions to lessen any negative psychosocial impact. Developing

interventions to address changes in psychosocial functioning is vitally important. The examples

found so far are feasibility studies, which while they are a necessary first step. These studies not

sufficient to address the problem. Effectively identifying which patients are at risk for

developing negative psychosocial outcomes is the most important action we have at this time.

33

Appendix A: Figure

34

Key Search Terms= organ transplant* AND living donor* AND psychosoc*

Limiters= English language, peer-reviewed, published between 2008-2018

Figure 1: Method for Literature Review Selection

Relevant citations obtained after screening of databases

(ERIC, CINAHL, PsycINFO, MEDLINE)

(n=258)

Citations that do not meet

inclusion criteria

(n=201)

Studies reviewed following retrieval for

inclusion

(n=57)

Studies excluded following retrieval and

review for not meeting inclusion criteria

(n=56)

Studies that met the inclusion criteria

(n=1)

Additional studies included following hand searching employing additional keywords

and credible reference citations

(total n=21)

35

Appendix B: Table

36

Table 1. Table of Evidence

Author(s)

Year

Location

Study Design

and Purpose

Sample

Size

Intervention

Protocol

Screening

Measures

Outcome

Measures

Key Findings and Limitations

Butt et al.

(2017)

United States

Cohort study

Observational

Eight U.S.

transplant

centers and

one Canadian

transplant

center in

comprise the

consortium.

The purpose

was to follow

living liver

donors (LLD)

and study to

occurrence of

psychological

outcomes

following

donation.

n=278

Major

depression,

anxiety, and

alcohol abuse

modules of the

Primary Care

Evaluation of

Mental

Disorders

(PRIME-MD)

were used to

assess the

LLD. Also,

the

Posttraumatic

Growth

Inventory-

Short Form

(PTGI-SF)

SF-36 were

employed to

measure

health related

quality of life

(HRQoL).

Interviews

were

conducted

The average

age at donation

was 36.79 years

old. 63.1%

were either

married or in a

long-term

relationship.

Most

participants

were white with

80.4%

identifying as

non-Hispanic

white. Donors

who were not

proficient in

English were

excluded from

the study. The

better person

scale and the

PTGI-SF were

used to screen

the

psychological

characteristics.

The PRIME-

MD was used

Most LLD scored

at the midpoint on

the better person

scale and the

PTGI-SF. The

factors associated

with affecting the

better person

score were time

since donation (p

< 0.001), first-

degree relative

versus being

unrelated

(p=0.012), female

gender (p=0.008),

recipient death (p

< 0.001), and

ambivalence

(p=0.005) and

motivation to

donate (p< 0.001).

The PRIME-MD

responses

indicated that

about 4-9.5% of

the donors had at

least one of the

The rate of mental disorders in

LLD were: 0-3% for major

depression, 2-5% for alcohol

abuse, and 2-3% for anxiety

disorders. One of the factors

that was identified that is

associated with a negative

experience from living liver

donation is whether the

recipient dies. The death of the

recipient has a negative impact

on the donor. Up to one third of

those donors felt guilt

following the death of the

recipient and up to 22% felt

some responsibility for the

death of the recipient.

Limitations: The sample did

not have a large representation

of minorities. Also, only 245

out of the 278 people enrolled

completed the initial survey

and one post-donation survey.

At the two-year post-donation

only 183 donors were eligible.

37

with LLD 1

month prior to

donation and

3, 6, 12, and

24 months

following

donation.

to see if LLD

had a least one

of the

syndromes at

any time point

in the study.

syndromes

measured at some

point during the

study.

Dew et al.

(2018)

United States

Cross-

sectional

The purpose

of this study

was to

elucidate the

long-term

effects liver

donation had

the donor’s

QoL.

n=424 During the

study,

participants

were

interviewed

over the phone

for 30-45

minutes.

Research staff

would also

retrieve

clinical data

from the

donor’s

medical

records.

The SF-36 was

used to

determine the

donor’s QoL.

The

socioeconomic,

clinical factors

from medical

records, and

donor’s

perception are

assessed.

Donors were

over 18 years

old and spoke

English to be

included in this

study.

Anxiety and

alcohol abuse

disorder (p <

0.001) were more

common in LLDs.

Also, the length of

the hospital stay

post-donation,

being female,

higher BMI, fear

of health related

effects, and out-

of-pocket

expenses were

associated with a

decrease in QoL.

Identification of factors

adversely effecting LLDs is an

important step forward in

ensuring that the donation

process is safe for the donors.

The researches found that

anxiety and alcohol abuse

disorder were seen with an

increased frequency in LLDs.

Limitations: Some of the

centers included in this study

so they have relatively small

sample sizes coming form that

site. This could make it hard to

see differences in those centers.

Dew et al.

(2016)

United States

Cross-

sectional

long-term

follow-up

study

n=517 Eligible

donors had to

speak English

and be over 18

years of age.

All the donors

included were

The study

assessed 3

psychosocial

variable and

general

HRQoL. The

assessments

Several factors

were identified in

the study that led

to a lower HRQoL

which include

male gender (OR

6.23, p < 0.001)

The study found that LLD

report adverse physical and

socioeconomic effects from

donation. Those at greatest risk

are non-Hispanic white males.

Up to 31 % of donors reported

38

9 transplant

centers in the

US and

Canada are

members of

the

consortium

3-10 years

post-donation

of their liver.

Donors were

interviewed

for 30 to 45

minutes

between 2002

and 2009.

included the

Checklist of

Donation-

Related

Physical

Symptoms, the

Posttraumatic

Growth

Inventory, the

better person

scale, and the

SF-36 version

2.

and being non-

Hispanic white

(OR 6.35, p <

0.001). Age 40 to

50 years old (OR

0.26, p=0.008)

were more likely

to have favorable

psychological

benefit and lower

physical and

economic

concerns

following

donation.

having physical or financial

concerns following donation.

Limitations: The study is cross-

sectional, which prevents

comparing pre- and post-

donation status. The study was

conducted in adults so whether

the findings correlate to the

pediatric population experience

is impossible to infer.

DuBay et al.

(2009)

Canada

Cross-

sectional

study

n=143 The LLD in

this study

completed a

questionnaire

3 months after

donation. The

questionnaire

collected

demographic

data, HRQoL

following

donation, and

feelings about

the overall

donation

process. To

measure the

HRQoL the

The

participants in

this study came

from one

transplant

center in

Toronto,

Canada. The

participants had

donated their

livers between

April 2000 and

March 2007.

The donors

who were at

least 3 months

post-donation

received the

The results from

the SF-36 were

higher than when

compared to the

average Canadian.

The physical

composite score

for the LLD was

56.4 versus 50.5

(p < 0.001).

However, the

mental composite

score was not

statistically

different than the

average Canadian

score. Physical

functioning (p <

In the SF-36v1 the LLDs

scored better than the average

Canadian on the physical

domains, but no predictors of

HRQoL post-donation could be

determined. On the other hand,

there were several predictors

that could be identified for the

mental HRQoL post-donation.

Age (p=0.023), presence of a

psychiatric diagnosis

(p=0.007), degree attained

(p=0.001), and pre-donation

concerns about donation all

(p=0.029) were all predictors of

mental health changes seen

following liver donation.

39

authors used

the SF-36v1.

questionnaire

by mail. More

Females than

males

completed the

questionnaire

(52% versus

33%).

0.001), role

interference (p <

0.05), bodily pain

(p < 0.001),

general health (p <

0.001), and

vitality (p < 0.05)

were all domains

that the LLDs

scored better than

the average

Canadian on.

Limitations: The response rate

for this study was 70%, so a

large portion of eligible

participants were either lost to

follow-up or chose not to

participate. This can affect the

study’s validity because the

population might not be

representative of all the people

that undergo this procedure.

The study did not give the

questionnaires to the

participants at set timepoints.

The LLDs feelings of the

experience could change over

time so comparing different

donors at different time points

my change the effect seen.

Holscher et

al.

(2018)

United States

Cohort study

Ongoing

study of living

kidney

donors.

n=825 Living kidney

donors (LKD)

were sent

quality of life

surveys and a

survey

detailing

medical,

surgical,

hospitalization

, psychiatric,

and social

history.

Participants has

a nephrectomy

between 1982

and 2015.

Enrollment

started in 2011.

The GAD-2

anxiety screen,

PHQ-2

depression

screen, and the

5-point Likert

scale were

employed to

measure the

Outcomes that

were measure

included a score

of 3 or higher on

the GAD-2

anxiety screen, a

score of 3 or

higher on the

PHQ-2 depression

screen, and the 5-

point Likert scale.

A positive screen

for depression was

more likely if the

person also

Overall the incidence of

anxiety, depression, and

regretting the decision to

donate their liver occurred in

5.5%, 4.2%, and 2.1% of the

respondents. These conditions

were very inter-related and a

positive screen for one was

often correlated with a positive

screen for another.

Limitations: Unlike other

studies, this study was

conducted at one transplant

center, which limits the

40

psychosocial

domains.

screened positive

for anxiety (p <

0.001). A positive

depression screen

was also more

likely to occur

when the recipient

experienced graft

loss (p < 0.001).

In addition, regret

was more likely to

be seen when the

person had a

positive anxiety

screen (p

<0.0001).

potential pool or participants.

The study may not have

enough participants to truly be

able to see differences between

the outcomes and donor

characteristics.

Hsieh et al.

(2017)

Taiwan

Cross-

sectional

study

The purpose

of the study is

to determine

the factors

that have a

positive and

negative

affect along

with the

HRQoL in

LKD.

n=41 The physical

health of the

LKD was

assessed along

with

demographic

data. The

Medical

Outcomes

Study 12-Item

Short-Form

Health Survey

measured

physical

HRQoL

through the

physical

The

participants had

the

nephrectomy

more than 3

months before

participating in

the study. All

participants had

to be able to

communicate in

Chinese or

Taiwanese.

Creatinine

clearance,

serum

creatinine, co-

Patients were

measured for

positive and

negative affect

and HRQoL.

Factors associated

with positive

affect were

gender, chronic

disease, and

perceived physical

health. Factors

associated with

negative affect are

relationship to

recipient, chronic

disease, and

When the LKD had a higher

positive affect, their HRQoL

scores were generally higher (p

< 0.05). Employment led to

higher mental HRQoL (p <

0.05). When LKD had a lower

negative affect score, their

mental HRQoL was higher (p <

0.01). Men, donors who are

siblings of the recipient, donors

having chronic disease, and

having poor physical health

were more likely to have a

decreased HRQoL.

Limitations: This study was

small and consisted of

41

component

survey and the

mental

component

survey.

morbid

diseases, as

well of

demographic

data, such as

marriage status,

educational

level, and

religious

affiliation were

gathered along

with measuring

physical and

mental HRQoL.

perceived physical

health. Women

demonstrated a

higher positive

affect than men (p

< 0.05). Lack of a

chronic disease

was associated

with a positive

affect (p < 0.05).

If the person

perceived having

higher physical

health, the

positive affect

score was higher

(p < 0.01).

exclusively Asian participants,

which limits wider application

of its findings.

Jacobs et al.

(2015)

United States

Cohort study

Aim was to

determine the

characteristics

that are

associated

with poor

psychosocial

outcomes in

LKD.

n=2455 Questionnaire

s were mailed

to 6909

kidney donors

from three

transplant

centers in the

US. 2455

responded to

the 11-page

questionnaire.

The

questionnaire

encompassed

areas such as

psychosocial,

financial, and

donor

outcomes. Data

was collected

between 2010

to 2012 with

LKD that

donated from

June 1963 to

June 2005. The

mean time

In regard to

psychosocial

outcomes, the

authors looked at

overall donation

experience;

financial burden

due to donation;

whether the donor

would donate

again; emotional,

psychological, or

substance abuse;

or regrets with

donating their

kidney. The only

A total of 231 patients reported

that they experienced a

negative psychosocial outcome

following donation. Almost 1

in 10 donors experienced a

negative consequence related to

their decision to donate their

kidney. One in 5 donors ended

up taking unpaid leave and up

to 2% reported having concerns

with life and health insurance,

which contributes to the

financial burden of donation.

42

since donation

was 17 years

(ranged from 5

to 48 years).

Respondents

were highly

educated (21%

had a 4-year

college degree)

and were white

(93%).

predictor that was

associated with

poor psychosocial

outcome was that

the recipient’s

kidney was no

longer functioning

(OR 1.77, CI

1.33-2.34, p <

0.001).

Limitations: While this study

had a larger sample size, the

response rate was only 36%.

Jowsey et al.

(2014)

United States

Cross-

sectional

cohort study

The purpose

of this study

was to reveal

the long-term

effects of

LKD on the

donor. The

study was

designed to

see

differences in

depression in

kidney

donors.

n=2455 Researchers

gathered data

from LKD

records. This

occurred prior

to the study.

The donors

were then

invited to join

the study. The

participants

completed a

short

questionnaire

initially and

then were

given more in-

depth

questionnaires

on their

medical and

Donors who

were targeted in

this study

donated their

kidneys

between 1963

and 2005 at one

of 3 transplant

centers. Areas

queried in the

questionnaire

were: loss of

interest,

depressed

mood, sleep,

appetite and

energy changes,

alterations in

self-worth,

concentrating

problems,

alterations in

The study utilized

the Patient Health

Questionnaire

(PHQ-9)

Depression Scale,

the Life

Orientation Test-

Revised (LOT-R),

and the 36-Item

Short Form Health

Survey (SF-36)

for measuring

QoL. The PHQ-9

indicated that

fewer depressive

symptoms were

associated in LKD

who reported

better physical

health (p < 0.001),

older when

underwent

For the most part LKD do not

experience an increase in

depressive symptoms. The

minority that do experience

depressive symptoms have a

history of depression that

predates kidney donation.

Longer recovery (p=0.009),

financial stressors (p=0.013),

younger (p=0.002), obligation

to donate (p=0.003), and

recipient graft status (p=0.007)

are associated with a LKD

more likely to develop

depression.

Limitations: While the study

included patients from three

transplant centers, there was

less representation of ethnic

minorities than represented in

the US population.

43

psychosocial

status.

their

psychomotor

activities, and

suicidal

ideations.

donation

(p=0.002), a

higher score on

the LOT-R (p

<0.001), being

employed (p <

0.001), and being

white (p=0.002)

Kimura et al.

(2015)

Japan

Cohort study

The purpose

of this study

was to

demonstrate

whether there

was a

correlation

between

physiological

variables and

the LLDs

quality of life.

n=142 The potential

donors were

evaluated by a

teen of

psychiatrists

and

psychologists

to determine

their intent

and to

determine

whether they

understood the

risks

associated

with donating

their liver. The

potential

donors were

evaluated for

mental illness

using a

structured

interview for

the Diagnostic

The donors

identified in

this study were

selected

between April

2004 and July

2005. The

subjects

included in this

study did not

have a mental

disorder prior

to donating

their liver.

Screening was

performed and

measured by

the donor’s

performance on

the SCID. The

donors with

mental health

disorders were

monitored on

the Global

Six (4.2%) of the

142 LLDs

included in this

study developed a

mental health

disorder. The

donors who

developed mental

health disorders

had complications

post-transplant

including inferior

vena cava

thrombosis,

wound infection,

severe anemia,

and bile leakage.

All the donors

who had mental

health disorders

showed an

improvement on

their GAF scale

scores. With

therapy 3

This study was very small in

scale. Essentially only 6 LLDs

were identified as having a

mental health disorder out of

the 142 screened. In half the

LLDs that developed a mental

disorder therapy was required

over an extended period of

time. The exact cause of the

mental disorders is not entirely

clear. It could be due many

factors including relationship

problems with the recipient,

death of the recipient following

transplant, and environmental

and genetic factors.

Limitations: The sample size in

this study is small. Only 6

people out of the 142 total LLD

identified as having a mental

health disorder and followed

through the course of their

mental illness. This study was

also conducted at one

44

and Statistical

Manual of

Mental

Disorders,

Fourth

Edition, Test

Revision

(DSM-IV-TR)

(SCID).

Assessment of

Functioning

Scale (GAF).

achieved

remission while 3

continued

treatment.

transplant center in Japan, so

whether the results would hold

up nation-wide or in other

countries has not been

addressed.

Ladner et al.

(2015)

United States

Cohort study

The goal for

this study is to

characterize

the HRQoL

for LLD up to

11 years

following

donation.

n=374 The study was

conducted

using data

from 9

transplant

centers. The

LLD were

evaluated

before the

procedure and

at 3 months,

one year, and

then yearly up

to 8 years

post-donation.

Between 2004

and 2013, LLD

were evaluated

with the Short

Form survey

(SF-36) for

LLD who had

donated

between 1998

and 2010. The

researchers

looked at the

physical and

mental

component

summaries

(PCS and MCS,

respectively).

The SF-36

consists of 36

questions that

provides data to

compute the PCS

and MCS scores.

The average age at

donation was 38

and 93% of the

donors were

white. 43% of the

donors had a

bachelor’s degree

or higher. The

largest predictor

of a poor PCS or

MCS score was

the death of the

recipient within 2

years of

transplantation

(PCS p=0.046;

MCS p=0.0004).

While most LLD maintain their

HRQoL post donation, there

are a subset of LLD that are not

able to maintain these levels

and develop a poor HRQoL.

Educational level is a

protective factor in those with a

bachelor’s degree or higher

generally reporting a higher

PCS score (p=0.023).


generated from several

transplant centers; however,

93% of the participants were

white, which does not reflect

the general US population.

45

Maglakelidze

et al.

(2011)

Georgia

Prospective

cohort study

The purpose

of the study

was to

determine if

HRQoL was

different than

a sample of

healthy

matched

people and a

small sample

of patients

who had

nephrectomies

following

renal tumors.

n=57 The

participants in

this study

received three

questionnaires

, the SF-36,

Giessen

Subjective

Complaints

List (GBB-

24), and

Zerssen’s

Mood Scale

(Bf-S).

The mean age

of the LKD

included in the

study was 49

years old.

There had been

61 kidney

transplants

since 2005 and

57 of the

donors

responded to

the

questionnaires.

This gives a

93% response

rate. The study

uses the

commonly used

SF-36 to

measure the

HRQoL for

LKD. The

authors

compare LKD

to patients who

had

nephrectomies

due to renal

tumors. This is

a novel

approach and

allows them to

The SF-36 found

three domains

where the LKD

were seen to

function

statistically

superior to the

control groups.

Social functioning

(p=0.0001), bodily

pain (p=0.0357),

and vitality

(p=0.0478) were

three domains that

the LKD scored

higher than the

control group. In

the GBB-24, the

LKD group scored

higher than the

other groups but

only the gastric

complaints were

significantly better

(p=0.008) better

than the control’s

scores. The mood

of the LKD were

also significantly

better than the

controls

(p=0.0007).

This study found that the

HRQoL was generally better

for LKD. There were not any

dimensions that the authors

mentioned where either the

controls or renal tumor patients

out-scored the LKD.

Limitations: The sample size is

small and relatively

homogenous given the

countries size. It would be hard

to extrapolate these findings

due to these limitations.

46

compare LKD

to others who

have one

functional

kidney.

Maple et al.

(2017)

United

Kingdom

Prospective

longitudinal

study

The authors of

this study

wanted to

quantify the

psychosocial

effects of

donation on

LKD.

n=77 LKD were

recruited for

this study in

their last

preoperative

visit before

donating their

kidney. The

questionnaire

consisted of

two parts. The

first part

consisted of

11 validated

measures of

psychosocial

outcomes. The

second part

asked

questions

related to

trans-

plantation.

The LKD were

selected for this

study between

August 2010 to

August 2013.

Responses were

obtained before

donation and at

3- and 12-

months

following

donation. The

psychosocial

factors

measured were

wellbeing,

distress, mood,

stress, physical

HRQoL, life

satisfaction,

self-esteem,

anxiety, social

support,

optimism, and

social

comparison.

At 3 months, LKD

scored lower on

physical HRQoL

(p < 0.05)

compared to their

pre-operative

scores. While

there was a

general increase in

the scores for

depression,

depression scores

were not

significantly

different than pre-

operative scores.

From this LKD

population, 6.8%

regretted their

decision to donate

at 3-months, and

10.7% regretted

their decision at

12-months.

Overall, there was very little

change in the overall

psychosocial health of LKD in

this study. The second part of

the study reflected the feelings

LKD had regarding the

process. Most LKD had

positive feelings about

donating their kidneys. The

authors purported no benefit

from kidney donation for the

living donor, but there was not

a negative effect either.

Limitations: This study had a

relatively small sample size.

Given that questions were

added that were not part of

validated questionnaires, the

changes seen over time might

not have been great enough to

detect.

47

Meyer et al.

(2017)

Norway

Prospective

follow-up

cohort study

The purpose

of this study

was to

demonstrate

whether

kidney

donation was

associated

with long-

term physical

complications

or a reduction

in HRQoL in

living donors.

n=202 This study

involved

obtaining

clinical values

such as blood

pressure,

serum

creatinine,

hemoglobin,

and estimated

glomerular

filtration rate

(eGFR). The

SF-36v2 was

employed to

assess changes

to HRQoL 10

years after

organ

donation.

Those included

in this study

underwent

donation

between 2001

and 2004.

Clinical data

obtained for

this study

included: blood

pressure, BMI,

creatinine,

eGFR,

hemoglobin,

PTH,

cholesterol,

triglycerides,

HDL and LDL.

Scores from the

PCS and MCS

were obtained

from the SF-

36v2.

There was no

statistically

significant

association

between the

clinical variables

and either the PCS

or MCS. The only

statistically

significant

correlations were

seen between

gender and

general fatigue (p

< 0.05) and

between BMI and

physical fatigue (p

< 0.01).

This was one of the initial

studies that looked to see if

there was a correlation with the

donors physiological state with

the psychosocial outcomes a

decade after donation.

Hypertension may be more

prevalent in the LKD group,

but it does not achieve

statistical significance.

Limitations: The study may not

have been powered to detect

differences due to the size of

the effects measured and the

population included in the

study. The study also took

place in Norway, which is not

as diverse as other places such

as the US, so the authors’

conclusions might not have

generalizability.

Meyer et al.

(2016)

Norway

Cross-

sectional

cohort study

The purpose

of this study

was to follow

a cohort of

kidney donors

over 8-12

n=217 The authors of

this study

employed the

SF-36 v2,the

Multidimensio

nal Fatigue

Inventory

(MFI), and

donor specific

questions,

The members

of tis cohort

donated their

kidneys

between 2001

and 2004. To

measure

HRQoL PCS,

MCS, physical

functioning,

Most of the

HRQoL domains

did not

demonstrate a

difference in score

related to age of

gender. The

exceptions were

that females score

significantly lower

Most LKD participants in the

study rated the HRQoL

favorably. The most important

implication of this study was

the gender differences seen in

the responses to the MFI

questionnaire. This study

demonstrated that women rated

their fatigue higher than men

within the cohort. This result is

48

years and see

if there was

any change in

HRQoL in

this cohort.

which also

addressed

clinical

outcomes.

role physical,

vitality, mental

health, role

emotional,

social

functioning,

general health,

and body pain

were scored.

The MFI

measured

fatigue with

domains such

as general

fatigue,

physical

fatigue, mental

fatigue, reduced

motivation, and

reduced

activity.

on their role

physical and role

emotional scores.

In relation to the

fatigue score, once

again gender was

not associated

with any

difference in

scored responses.

When looking at

gender, women

score higher on

general fatigue

(p=0.01), physical

fatigue (p=0.01),

reduced

motivation

(p=0.04), and

mental fatigue

(p=0.03).

not consistent with results seen

in other studies. Further studies

are necessary to see whether

this result is significant.


conducted at one center in

Norway. Also, the population

is less diverse in this country

than in other such as the US.

The findings may not be

applicable to the across all

countries and ethnicities due to

the homogeneity of the

Norwegian population.

Noma et al.

(2011)

Japan

Prospective

cohort study

The authors

observed the

psychosocial

states of

living liver

donors and

recipients.

The goal was

to see if there

n=30 The State-

Trait Anxiety

Inventory

(STAI) and

Beck

Depression

Inventory

(BDI) were

used to assess

the

participants’

mental health

Anxiety,

Depression, and

perceived

quality of life

were measure

through the

questionnaires

were measured

several years

after

transplantation.

Long-term

In this study both

recipients and

donors were

followed after

liver transplant.

The donors

reported less

anxiety symptoms

using the STAI-S

following

transplant

(p=0.027). The

The main predictors of the

donor’s psychosocial state

following liver transplant were

family or support system

availability and the recipients’

depressive states when the liver

transplant is performed. The

social QoL was affected in both

donors and recipients 3 to 5

years following liver donation.

49

were

characteristics

that would

predict post-

donation

response to

psychosocial

domains.

while the

World

Organization

Quality-of-

Life

Assessment-

26

(WHOQOL-

26) was used

to assess

psychosocial

domains.

outcomes in

liver transplant

were explored

by looking at

the effects of

several

variables on

both recipients

and donors.

social QoL

(p=0.026) and

total QoL

(p=0.005) also

diminished

following

donation.

Limitations: This study only

included 30 donors and 40

recipients. This study is also

conducted exclusively in Japan

and the results might not be

applicable in other countries or

in other races.

Rodrigue et

al.

(2017)

United States

Observational

cohort study

The purpose

of this study

was to build

upon previous

studies which

explored the

financial

burden of

living kidney

donation. In

this study the

authors

wanted to

explore the

effect of

donation on

the

psychosocial

n=193 The authors

utilized the

Profile of

Mood States

(POMS) to

assess anxiety,

depression,

and anger. To

assess the fear

of kidney

rejection the

authors used

the 5-item

Fear of

Kidney

Failure (FKF)

questionnaire.

To assess

body image,

the 10-item

body image

LKD were

recruited from

6 transplant

centers in the

US from

September

2011 to

November

2013. All

participants

were older than

18 when

enrolled and

spoke English

or Spanish. For

assessing mood

and body image

higher scores

reflected more

mood

disturbance or

Overall, The

scores obtained

showed that both

LKDs and HCs

scored similarly

on most of the

HRQoL measures.

Older age is

associated with a

lower mood

disturbance score

(p=0.001) and pre-

donation mood

disturbances are

associated with a

higher mood

disturbance score

(p=0.01). Fear of

kidney failure is

associated with

pre-donation

For the most part, the incidence

of new onset mood

disturbances, body image

issues, life dissatisfaction, and

fear of kidney failure were low

in this study. The reported

incidences were 16%, 13%,

10%, and 21%, respectively.

These values are in agreement

with what other researchers had

published, but further studies

are necessary to ensure that

there really is a difference

between LKDs and HCs.

Limitations: Only 20 HCs were

included in the analysis of this

study. That is not a large

enough number to truly

compare the two groups. The

sample size is moderate in size

50

domains:

mood, fear of

kidney failure,

body image, ,

life

satisfaction,

and decisional

stability.

scale (BIS)

was

employed.

The 5-item

Satisfaction

with Life

Scale (SWLS)

was employed

to measure life

satisfaction. A

series of

questions were

employed to

assess

decisional

stability. The

questionnaires

were

conducted at

1, 6, 12, and

24 months.

poorer body

image. A

higher score in

life satisfaction

indicated

increased life

satisfaction.

kidney failure (p <

0.001) and

associated with a

lower score for

married

individuals

(p=0.004). Body

image concerns

were associated

with higher scores

for pre-donation

body image

concerns

(p=0.002) and

perceived

donation pressure

(p=0.02). Being

white was

associated with a

lower life

dissatisfaction

score (p=0.003)

while pre-

donation life

dissatisfaction was

associated with a

higher score (p <

0.001).

and unlikely to truly reflect the

population as a whole.

Timmerman

et al.

(2016)

Netherlands

Prospective

cohort study

The purpose

of this study

n=151 The

participants

took part in a

structured

interview and

Participants

were recruited

between July

2011 and

September

Mental health was

measured by the

Brief Summary

Intervention (BSI)

and the Positive

Being young and a deficiency

in social support were

associated with an increase in

psychological symptoms

(p=0.002 and p=0.001,

51

is to

determine

whether stress

mediates the

psychosocial

effects

following

LKD.

a

questionnaire

prior to

donation and

at 3 and 12

months.

2012. LKDs

had to be at

least 18 years

old and speak

Dutch.

and Negative

Affect Schedule

(PANAS). Well-

being was

measured by the

Dutch Mental

Health

Continuum-Short

Form (MHC-SF).

Stress was

measured through

the Depression

Anxiety Stress

Scale. Coping

scored using the

COPE-Easy.

respectively). More stress led

to a decrease in overall well-

being (p <0.001).

Limitations: Some of the scales

used to quantify the

questionnaires have not had

their validity confirmed in the

situation. The sample size is

relatively small which can

affect the ability to see changes

in outcomes.

Timmerman

et al.

(2015)

Netherlands

Cohort study

The purpose

of the study is

to further

elucidate the

effect living

kidney

donation has

on mental

health.

n=135 The authors

got

demographic

data and

measured QoL

with the BSI

and MHC-SF.

The primary

analysis was

conducted at

pre-donation

and at 6

months.

LKDs were

recruited

between July

2011 and

September

2012.

Mental health was

assessed utilizing

the BSI and

MHC-SF. There

was no change in

psychological

disorders (p=0.2)

or well-being

(p=0.1).

The analysis of the study fails

to provide evidence that the

HRQoL is affected by any of

the factors identified in this

study.

Limitations: The patients in the

LKD group are more likely to

be older, which may not reflect

the normal age distribution.

Trotter et al.

(2001)

United States

Cohort study

The authors

wanted to

n=24 The authors

used the

Medical

Outcomes

In August of

2000, the 24

LLD that

signed

LLD scored

similarly to the

HCs in all

domains of the

Major and minor complications

occurred in 16% of the donors.

Most LLD made a complete

recovery; however, it took

52

determine the

effect of

psychosocial

domains on

LLD.

Study 36-Item

Short Form

Survey (SF-

36) to assess

the

psychosocial

domains of the

donors.

informed

consent were

sent the SF-36

questionnaire.

The LLDs

mean age was

33.2 years old.

Men also made

up 58% of the

cohort.

SF-36 except for

physical function,

social function,

and mental health

(p < 0.05) where

the LLDs scores

were higher than

the controls.

approximately 3.4 months to

achieve. Even though the

procedure was not painless and

there was a significant out-of-

pocket expense associated with

donating their liver, all donors

answered that they would

donate again.

Limitations: This study has a

small sample size and the racial

make-up of the study does not

reflect the racial make-up of

the US population. 71% of the

participants were white in this

study.

Walter et al.

(2003)

Germany

Cohort study

The purpose

of this study

was to see if

one could

correlate the

donor’s QoL

with

complications

that occur.

n=28 In this study

the authors

subjected the

LLD to

interviews and

performed

psychological

tests. The

authors used

the WHOQOL

questionnaire

to determine

any

differences in

QoL.

The LLDs were

recruited

between

August 2000 to

January 2002.

The average

age of the LLD

was 41 years

old. The

domains

included in the

WHOQOL

questionnaire

are: physical

health,

psychological

state, social

Before donating

their liver,

members of the

cohort scored

significantly better

than the controls

in all domains

measured with the

WHOQOL

questionnaire (p <

0.05). Once the

donors made it to

the 6-month mark,

they scored lower

on physical health

(p < 0.05) and

In general, most of the LLDs

reported that their QoL as

good. This study served as an

early example on which others

have expanded our

understanding of the HRQoL.

The majority of donors in this

study were not affected by the

procedure; however, to really

determine whether there is an

effect there needs to be a larger

sample size.

Limitations: This study is small

and was included to provide

some historical context.

53

functioning,

and living

conditions.

living conditions

(p < 0.05).

Walter et al.

(2002)

Germany

Pilot study

The goal of

the study was

to correlate

psychosocial

outcomes and

post-operative

complications

.

n=23

Psychosocial

parameters

were

measured

through the

following

assessments:

the

Anamnestic

Comparative

Self

Assessment

Scale

(ACSA), the

Berlin Mood

Questionnaire;

Giessen

Complaint

Questionnaire;

and the Self-

effectiveness,

Optimism, and

Pessimism

Questionnaire.

A total of 26

LDLT we

identified at

Virchow-

Klinikum

during the

period of

December

1999-October

2000. The

average age

was 41 years

old (ranged

from 20-years

old to 66 years

old). Donors

were assessed

using a variety

of quality of

life (QoL)

measures.

Three donors

were excluded

due to lack of

German

proficiency.

Change in QoL 6

months following

transplant from

pre-transplant

levels.

Global quality of

life significantly

higher 6 months

following

donation

(p=0.044).

However,

following

donation 26% had

high values for

tiredness (p <

0.0012) and

fatigue (p <

0.0012). Other

measures of

physical

complaints were

not statistically

different from the

average

population.

Generally, LDLT donors rated

their global QoL higher

following donation of their

liver. While donors reported

increases in tiredness (p <

0.021) and fatigue (p < 0.0012)

6 months following organ

donation (p < 0.021), donors

reported less anxious

depression following donation

(p < 0.002). Post-operative

complications did not

significantly affect the QoL

domains.

Limitations: The sample size

for this study is extremely

small. Also, the donors were

usually spouses or children of

the recipients, which could

affect perception of the

experience.

54

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